Fred Hutchinson Cancer Center is committed to inclusivity in clinical trials. We recognize that it is essential to have a wide range of people from different communities participate in clinical trials to reduce biases, promote social justice and health equity and produce innovative science.
People may experience the same disease differently. It is essential that clinical trials include people with a variety of lived experiences and living conditions and a range of characteristics, like race, ethnicity, age, biological sex, sexual orientation and pregnancy status, so that all communities benefit from scientific advances.
To meet the needs of all participants, Fred Hutch provides interpreters, accessible facilities, accessible navigation guides and other services. We encourage you to discuss your specific needs with the research team and your care team so that they can help make sure your needs are met.
Participation by Historically Under-Represented Groups
Clinical trials have not always included participants who fully represent the people most affected by a disease, condition or behavior. This shortcoming has created gaps in our understanding of diseases and conditions, preventive factors and effectiveness of therapies across populations. These gaps in knowledge can negatively impact the quality of health care decision-making, providers’ ability to counsel people on ways to reduce their risk, optimal treatment responses and even the development of more effective medicines or interventions.
At Fred Hutch, we strongly believe that when clinical trials have diverse participants, researchers can better explore all factors that might affect study results and the relationships between these factors. Inclusivity also allows people of varied backgrounds to have a voice within clinical research and to share their experiences and knowledge with their community.
Our Commitment to Serve People of All Ages
Cancer and cancer treatment may be different in people of different ages, so clinical trials need to involve children and older adults. Growth, development and metabolism — which vary by age — can all affect how a body responds to cancer and treatment. Children, whose bodies are not fully developed, sometimes need different dosages of medicines than adults. People of different ages may also experience different side effects from the same medicine. Fred Hutch research teams are committed to conducting clinical trials for patients of all ages to determine the best therapies at any age.
Whatever your age, consider joining a clinical trial. Ask your care team whether you qualify for any studies and whether any of them might be a good option for you.
Children and Clinical Trials
More than half of all American children with cancer participate in a clinical trial and today, the outlook for most children with cancer is promising — about 80 percent who are diagnosed survive. This is a significant improvement compared to the 10 to 20 percent survival rate from 50 years ago. This is due in large part to the new therapies discovered through clinical trials.
Frequently Asked Questions
Your child’s physician may talk to you about clinical trials, also called clinical studies. When considering a clinical trial, you will want to understand any differences between the standard treatment for your child’s disease and the treatment your child would receive in the clinical trial.
In most clinical trials for children with cancer, some will receive the standard treatment, while others receive an investigational treatment (where new medication is being tested). Often this investigational treatment is very similar to the standard. For example, it may be the same medicine given at a different dose or given with a different combination of medications that have previously been shown to be effective. Your child’s care team will explain all your child’s treatment options, including standard treatments and clinical trials.
The National Institutes of Health also has additional information about clinical trials for children and resources for parents.
Talk with your child’s physician and care team about how much time you have to decide. Depending on your child’s disease, physicians may need to start treatment quickly, or you may have days or weeks to decide.
No. Participation is completely voluntary. Whether your child participates in a clinical trial or not, through Seattle Children’s or Fred Hutch, your child will get the same high quality of care and receive treatment from the same care team.
Yes. Physicians understand that you may want a second opinion and they will not be offended if you ask about getting one. The ideal way to do this is to discuss it with your child’s primary oncologist (cancer physician) to ensure that any consulting physician offering a second opinion has access to your child’s full medical information.
No. Children under the legal age of consent — age 18 — cannot give informed consent, which implies fully understanding the study process, risks and other factors. This means you as a parent or guardian must be involved in the decision and must give permission for your child to enroll in a study.
Depending on your child’s age, they may be able to understand at least some aspects of this decision and may have an opinion.
According to the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research, children age 7 or older can agree or not agree (“assent” or “dissent”) to take part in clinical trials. Before your child agrees or disagrees, you as a parent or guardian must explain the study to them in terms they can understand. Your child’s care team can help you. Visual aids may help, too.
According to the National Cancer Institute, clinical trial researchers must obtain a child’s assent (agreement) unless:
- The child is not able to assent (for instance, the child is an infant).
- The clinical trial offers a therapy that’s considered better than those that are currently available.
- The clinical trial is the only treatment option.